Rage, rage against the (prolonged) dying of the light

Modern medicine allows doctors to prolong life by artificial means - sometimes to the detriment of patients' well-being. To die a good death requires us to talk about it while we are alive.
By Chong Siow Ann, Published The Straits Times, 20 Jun 2015

"A MONTH ago, I felt that I was in good health, even robust health... But my luck has run out - a few weeks ago I learnt that I have multiple metastases in the liver... now I am face to face with dying," wrote author and neurologist Oliver Sacks in an essay in the New York Times in February. He continued: "It is up to me now to choose how to live out the months that remain to me. I have to live in the richest, deepest, most productive way I can."

Most of us cannot tell with certainty how we would respond should we be ambushed one day by a terminal illness - "like some hidden assassin waiting to strike at you", in the words of poet W.H. Auden (who was a friend of Oliver Sacks'). When that happens, we would be brutally compelled to decide on how to live that final stretch of foreshortened future. Very likely, we would also want to "live in the richest, deepest, most productive" manner. And we would want to die a "good death", which can be defined by a tabulation of negatives: not to die a messy death with things undone and unsaid, not to cause too much anguish to our loved ones, not to experience a humiliating loss of independence and bodily functions, not to suffer much pain, and not to die alone.

Battling till the end

IN HIS 1994 book, How We Die: Reflections On Life's Final Chapter, Dr Sherwin B. Nuland was unsparingly pessimistic about the prospect of a "good death". In his view it was wishful thinking and self-deceiving to even nurse this hope. "I have not seen much dignity in the process by which we die," he wrote. "The quest to achieve true dignity fails when our bodies fail." Deciding that his chance of a "good death" was slim, he concluded with the epiphany that "the dignity we seek in dying must be found in the dignity with which we have lived our lives".

Exactly 20 years later, surgeon Atul Gawande, in his latest book Being Mortal, lamented the bleakness of a modern death: "These days, swift catastrophic illness is the exception. For most people, death comes only after a long medical struggle with an ultimately unstoppable condition."

Most of us do not want to die even when it is utterly hopeless. Nor do we know when to give up, and we persevere to hope against hope. This is engendered at times by doctors who might not know when to stop.

The rescue credo is an intrinsic part of medicine: Doctors are trained to save lives and would usually do almost everything to do so. With the panoply of biomedical technologies and therapeutics, medical treatment often continues to the point beyond futility and where each successive measure to prolong life compounds the last and leads to a state of cumulative suffering.

Dr Gawande related the harrowing travail of a 34-year-old woman with inoperable metastatic lung cancer who endured eight months of various treatments, with debilitating side effects and other medical complications, before dying in a hospital.

Such is the will to live that even in a situation devoid of hope, "our every impulse is to fight, to die with chemo in our veins or a tube in our throats or fresh sutures in our flesh... We imagine that we can wait until the doctors tell us that there is nothing more they can do... But rarely is there nothing more that doctors can do".

Dr Gawande commented ruefully: "They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumour, put in a feeding tube if a person can't eat: there's always something."

It is likely that things are very much the same here, as suggested by the view of an unnamed doctor who, in a Lien Foundation report last year, expressed that the local "healthcare system has been designed to go all out", and even when "doctors realise that they can't do any more medically for their patients... they are not empowered to pull the brakes... Other times there is denial on the part of the patient and/or relatives... leading to increasing costs and more suffering".

When the chips are down

TO AVOID that sort of messy and protracted death, I have in place an Advance Medical Directive (AMD), which is that legal document I signed in anticipation that should I be "terminally ill and unconscious", the treating doctors will know that I do not want any "extraordinary life-sustaining treatment" to prolong my life.

The document lies dormant in a drawer in my study, waiting to be kindled one day to thwart any unnecessary extension of my ebbing life. I signed it when I was 10 years younger and in a state of good health.

I signed it out of my experience as a doctor who witnessed patients dying and of my father's death in intensive care, and based on my personal values and principles about life and death.

A part of the document also assured me that I may revoke my AMD at any time in the presence of at least one witness.

The truth is that I really do not know if I would be that same person I imagined, stoically eschewing any heroic life-prolonging interventions when the chips are down, or if I would instead choose to battle on for the chance of a bit more time in the land of the living, with whatever means at hand and at whatever costs.

Indeed, ample research has shown that when critically ill, people waver from their advance medical directives.

At the point of signing the medical directives, people often underestimate their ability to cope with adversity. But when they do end up in that desperately ill state, they adapt and become more willing to undergo invasive treatment, with limited or even questionable benefits.

There are other mediating influences that might come into play.

The dying person might still find the will and purpose to live by narrowing his life to some focus. This might be some simple pleasure that can still be savoured or an anticipated occasion such as wanting to see a daughter get married or a son graduate from university.

In times of need, we also have an array of coping mechanisms that kick in. These unconscious processes, such as rationalisation, compartmentalisation and denial, are mental barricades that keep those dark fears at bay, buffer us from further emotional distress, and possibly make the remaining time more tolerable.

Heroic measures

THE interpretation of what is "terminal" and what constitutes "extraordinary interventions", as laid out in the Advance Medical Directive, is in the hands of the doctors whose actions thus amount to the final act of compliance with a patient's wishes.

As a doctor, I can understand how difficult this can be, particularly if faced with one of those front-line "in-the-moment" clinical decisions that need to be made fast and where there is no room for dithering. Consider the scenario that Dr Rebecca Sudore and Dr Terri Fried, researchers in the process of end-of-life decision-making, posed: A patient with incurable lung cancer with an expected survival time of at least two years and has an AMD specifying "no heroic measures" and "no artificial interventions to sustain life".

He then develops transient heart failure, which could be treated. But the treatment would require him to be intubated and hooked up to a ventilator. Does this constitute a "heroic measure" and does it contradict the patient's stated wish of "no artificial interventions"?

I suspect that in that knife-edge situation, most doctors would take the martial stance to intubate and ventilate.

The ethos of the medical profession would demand that no patient with a salvageable condition should be allowed to die. When torn between what Dr Gawande called "the mistake of prolonging suffering" and "the mistake of shortening valued life", I think most doctors would choose to err on the side of extending life.

In the two decades since the publication of How We Die, we have made even more advances in keeping people alive, and Dr Nuland's words then are perhaps just as - if not more - relevant in this present time: "We live today in the era not of the art of dying, but of the art of saving life, and the dilemmas in that art are multitudinous."

We can start to resolve these dilemmas only if we are prepared to talk openly about the art of dying, but I wonder if we are ready and mature enough to do so as a society. In a study among residents in Toa Payoh (published in 2010 in the Annals of the Academy of Medicine, Singapore), about a third of the respondents thought the AMD "irrelevant" either because they believed that they would not land in a situation requiring an AMD, or they just did not want to think about death, on the superstition that ill luck would befall them if they do so.

We need to face up to the obvious fact that we are mortal and that to minimise a bad death, we must continue to have that discussion on end-of-life issues - such as AMD, palliative care and even assisted suicide and voluntary euthanasia - uncomfortable and unpalatable though they may be.

The writer is vice-chairman of the medical board (research) at the Institute of Mental Health.